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Now the real challenge starts. So far I have had so many distractions in my life that I have never really been alone with my MS. I always had other things to keep me busy or keep my mind off my troubles. Even when I was in the hospital, my focus was on getting better. I have worked through my entire diagnosis and this is the first time I will not have a job since before college. So forgive me if I resort to what I know.

After only a week back in New Orleans I posted my resume on some job websites. I was bragging to my friends about having a great week. I told everybody that would listen I was feeling fantastic and I haven’t felt this good in months. I believed my “spell” had past and old mister MS had gone back to sleep. I was saying all of this from a wheelchair. I was stuck in denial.

Tommy set up a full-length mirror that I passed everyday. One day while walking by the mirror I stopped and looked at myself. I mean I really took a good look. As I stared, I was disappointed that I didn’t see the Nicole I use to know, the one that I still pictured myself as. I saw the new Nicole. The one that couldn’t stand up straight and used a walker to get around the house.

I thought, “Look at me. Who in their right mind would hire me?”

I slowly slid to my knees and began to do what I do best. I cried.

But this time it was different. I wasn’t sad and not really sure why I was crying. Yes, I know I was missing the old me but the reality is, that person is gone and will never come back and I was ok with that. How I came to that conclusion I may never know but it was a wonderful enlightening moment. I think that may have been the first time I really faced my MS. And guess what. I won!

Despite having won that battle I knew there would be many more and I had to prepare myself. People always tell me that I’m so strong. I am always smiling and seem to be having a good time. That may be true sometimes but there are many times I feel melancholy and my whole day, sometimes my entire week, is controlled by sadness. In order to keep my sanity I found an excellent psychiatrist and began some relaxing pastimes such as laughter yoga, meditation, and blogging. I also created some coping mechanisms.

So what do I do? I mean, other than cry.

Despite the challenges that MS brings I don’t just sit in my bedroom letting my life pass me by. Yes, MS is physically, mentally and emotionally exhausting but I learn as much as I can about the disease and my body so I can understand my weakness and strengths.

Overall, I try to stay positive. Most people I meet with MS seem to share the same optimistic attitude. Yes, this is an enormous barrier that was sent my way without rhyme or reason, but I’m determined to get on with my life.

I try to stay positive because getting angry doesn’t help. It doesn’t solve my problems and it eats up my limited energy that I could use doing something more constructive. There are periods of times when I just can’t do what I want to do so I cautiously plan my days so I am able to complete most of my tasks.

I try to convince myself that others are worse off than me even when it’s probably not the case. When I go to the doctor’s office I see people who appear perfectly find. I usually sit in my wheelchair and try to figure out what’s wrong with them. You can clearly see what my medical problems are but these people could have all types of unseen issues. I know that sounds crazy but it works for me sometimes.

I am also working on ways to cope with my feelings. At times I suppress my emotions not to bother others. No one wants to be around someone who is always complaining. At least I know I don’t. To hide my complaining, sometimes I laugh when I want to cry. This results in people not taking me seriously. Most just see a happy-go-lucky person. I can imagine them saying, “She looks a mess but she was so nonchalant, everything must be ok.”

Guess what, everything is not ok. I shouldn’t be upset with them because I am the one that gave them that impression of me. But I just don’t know how to tell folks I am not ok, without scaring them away. I wish people could read my mind and know when I’m going through adversity and not think my plight is a joke. When this happens I usually begin to feel sorry for myself.

To help me stay on a path of positive self-affirmation, I like to recite this adage: God, grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.

I took that from Alcohol Anonymous (AA) and it seems to work in my daily life. Hope they don’t mine.

Though easy to cry, I think I’ve always been a strong person. But lately, I have been feeling weaker than most. To counter that, I try to get concerns off my chest and employ everything I have learned. The four main things I have learned through this entire journey are:

1. The control I speak of losing…no one has. Lives can change in an instant for anyone with or without MS. On a daily basis, most of us lose sight of this. I am just more acutely aware of the possibility of change. In fact, this life-changing situation is merely the most recent pothole.

2. Family and friends are everything. I could not have survived this without their support.

3. My life is less about this life changing disease and more about my response to it. Don’t let me confuse you. This is something I continually have to remind myself.

4. I have the best husband in the entire universe!

WE ARE CONSTANTLY ACCEPTING, ADAPTING AND MOVING FORWARD, TOGETHER TOWARD NEW NORMALS

My New Normals

(My story was written using voice recognition software so forgive me for any mistakes.)

Nicole, I read your story and my god be with you and your wonderful husband. My ex-wife was diagnosed with Ms, but she never told me. I notice the behavior changes. I found out through divorce. I love her just like your husband love you unconditionally . She hides the fact that she has MS, I have reached out too her. I do worry about her everyday. Thanks for your courage .

Hi Nicole,
I am so grateful that I found your blog, once I started reading I couldn’t stop.
My Dad has recently been diagnosed with ms after spending more time than usual with him yesterday I noticed little things that I’ve never noticed before like his struggle to walk. Your blog gave me an insight to what he may be going through in his mind which will help me to try to help him without being insensitive.
Best wishes from uk
Michelle

I’m a little over a year since diagnosis and definitely in that “denial, everything is fine stage”. Just last night my husband made some reference to needing money to take care of me in the future and I balked. I’m fine! He is probably right, I don’t even want to think about it.

Thank you so much for sharing your story. I know I struggle with a lot of the same things you do (denial, not liking being on the receiving end of help).

Hi Nicole! I just read your journey, and I found it very interesting, and inspiring! Thank you for sharing it! It has help me to do some thinking about my life, my journey with ms, and some of my family members, especially my babygirl Kelli. I’m going to have a heart to heart with her later. Your story gave me a lot to think about! Once again thank you so much!! You journey has been a blessing to me! Stay blessed! 🙂

Love this riveting chronicle of your jouney..it’s a lot of what we share..i wonder the same thing sitting in the neurologist’s office-I’m not in a wheelchair but I walk slowly and precisely at times, I miss my Copaxone shots days on end and now you have challenged me to take the bee bite every day regardless! I think I wondered if missing a day or two really made a difference-my hands tremor at times-I’ve been falling..it seems at the end of the day things get worse for me and especially when it’s brutally cold in the mornings I have trouble getting out of bed in the mornings and I think my poor husband just wants to believe this isn’t happening to us but guess what your spouse endures a lot of it as well. I’m still reading!! Grateful for the bloody truth you share here!

I just finished reading your story, and I want to thank you for sharing and let you know that your words have resonated with me deeply – the driving and control issues for me are hand in hand. I was initially told in 1992 that they “thought it was MS” then decided that it was chronic fatigue, as I was positive for Epstien Barr virus. In 1994 I went into remission, and through subsequent “events” through the next 19 years I have told myself I was depressed, not getting enough exercise, under stress, etc. etc., It seemed that everyone thought I was crazy, sometimes myself included. Well, bottom line, not able to hide any more, and actually relieved to have an answer, and be able to identify why all these crazy things have been happening all of these years. So, in a way I feel like an infant with this MS thing, and I look forward to checking in with you. Thank you, for giving me comfort, and direction. I have been experiencing anger this week, and it has been about control. It is hard to let go, and I think driving is the thing we feel gives us independence and freedom. I would like to hear more from you about dealing with the frustration and anger of losing personal mobility, privacy, and how you kept from unleashing the feelings on those around you. Thank you, Nancy

Benny, Wow, thanks for stopping by. I can’t imagine the both of you having it! You should be the one blogging. But if that’s not an option you guys are more than welcome to stop by here anytime, although I release current posts on Tuesdays.

Thank you for sharing your story here. I appreicate you
My husband was diagnosed with MS in 2002 after walking into some brick walls leading to our apartment right outside of BR LSU.
Must be something about LSU. Gotta love it, even if you sometimes literally bleed that purple and gold.

Thank you for your story. I had my first episode and was diagnosed about one month ago. I still have not regained full vision or feeling in my left side. My doctors and I aren’t sure if I will but I am hopeful and prayerful. I’m terrified. I’m in a serious relationship but not married. Now I’m not sure if I should marry or have children. Perhaps it would be selfish to knowingly bring others into what the MS life could become. I’m scared. I’m terrified.

NNN, Honestly, I understand and opted not to have any children, It was an easy decision, because my husband didn’t want any. But now years later, I kinda wish I would have. I post new posts on Tuesdays and would love to have you back.

N3, I am going to have a child. I read in current research there is only a 3% chance of passing it on. My mentor said to me, “are you grateful for your 36 years of amazing life before this happened”? And I was, deeply. Even identical twins don’t develop the disease all the time, you can read about it in (Kalb, 2012).

Also, I meant to add that you are probably taking a steroid that is altering your emotions and thought process. Now is not the time to make an important decision like that anyway-you have to focus on remitting and also what long term meds, if any (not recommended not to take), with the help of a neuro. Massage, walking, and being patient knowing the symptoms will most probably abate will see you through. Some things also may happen that will force you to realize that your dignity doesn’t live in your bladder or bowels. You will feel at that point that life is pretty cruel, but just remember if it is your first flare it too shall pass. We all had to suffer through it. I spent a lot of time cleaning, making my significant other my power of attorney, and organizing. I also made an MS folder to take to doctor’s appts. /hugs

Thank you for your story, I was just diagnosed with MS on 10/10/12 and it has been a roller coaster with the whole diagnose process and my fiancee getting a new job and moved 1000mi away while I was left to deal with all the wedding plans. Now things have calmed down, I am married to the best man in the world, I love the new place that we moved to, and my symptoms have calmed down. Your story has really inspired me. Thank you.

Christy, Thanks for reading my story. I’m glad it inspired you. Please know that I would love for you to come back as I put out new articles every Tuesday dealing with ups and downs I face daily. So I know you have a lot going on with the move and marriage but I’d love to see you back again.

Nicole you are an excellent writer and I admire your courage and positive attitude. As we journey through this life, we are presented with many challenges and we never know ahead of time what they may be. I pray that God will give you the strength to meet each new challenge head-on, knowing that He is by your side and that you will be able to make each day purposeful. You have found your calling. Your nursing career is not over, for you are now ministering and serving people with medical needs through this blog, and perhaps someday through the recording of all of this in a book. Your experiences and feelings are helping not only those with MS and other disabling diseases, but also the medical profession to have a better understanding and empathy for those in your situation and perhaps find ways to better meet those needs. This bible verse has always given me comfort in difficult situations. I hope it helps you also. “Do not fear, for I am with you. Do not be dismayed for I am your God. I will strengthen you and help you. I will uphold you with my righteous right hand.” Isaiah 41:10

Nancy, Thanks for stopping by and do Know that I release new posts on Tuesdays. Writing has become a surprising conduit of a host of emotions for me. I really had no idea how many people could relate. I love to see your name again and thanks for the verse.

Hi Nicole – found your site yesterday. I’ve had was diagnosed with RRMS in 1986 and it always saddens me to read testimonies of people with MS. You have a gift fro writing – thank you for sharing and with such candor and sensitivity. I would like to get to know you and maybe have the courage to write my story one day!

Your story hit home for me. I’m 4 years into the dx and it has been ‘uneventful’ except from the first flare (which is what got me diagnosed). I am sooooo scared of exactly what happened to you. I have been blessed with a few years of near normal life and wonder when the next day will be when I wake up and it all changes.

I appreciate your brutal honesty. I become tired of all the flower-lined stories people share. It does suck and I do get angry, just like you.

Your lessons are ones to live by. You especially have a good point with #1. I have to remember that NO ONE has control.

Cathy, Thanks for reading my story! You know I second that ’emotion’ just be careful not to stay angry too long or wait for the next miserable thing to happen for too long! Because girl we need to get up and out now while we can. Plus, that miserable thing may not even happen anyway.

Just read your WHOLE STORY. Very good & so very similar to each MS sufferer. It is great that you are able to verbalize YOUR journey so that others who suffer know that they ar bot traveling this road alone. We all do “walk” that same path, some of us with different paths. Each of us has had to adapt to a different world/lifestyle, tweaking as we go. Keep up the good work Nicole telling “our” story.

You are one of the lucky ones your husband sounds amazing and he is lucky to have you to…as you bring so much to his life. You are right good strong family provides security..I’m just grateful that I am one of the lucky ones as well as your husband sounds like my husband’s twin…

Nicole, I enjoyed reading you story and as someone with MS , I can relate to most of what you told… Thank you so much for sharing.. I too miss so much of who I used to be before MS.. and hearing your story along with what I have learned from others with this dreadful disease give me courage daily as reach for that inner strength that will be long for the ride… Not yet a year into my diagnosis, I struggle with denial, fear, anger alot! But knowing that I am not alone… is a big comfort. Look forward to checking out the rest of your site..

It was really good to read your story and feel your strength. Thank you for reading my words as well. You inspire me to keep writing about my experiences with ms. I hope we can both stay in touch. Talk to you later, Marco

Nicolle,
I came to your website after you victed my blog. Thanks so much for your comment, and for your wonderful writing. Your blog resonates for me in many ways (especially when you write about dealing with not driving and your wonderful husband!) Good luck to you my dear — yes, your friends are right there are many lessons along this journey, and I one that I am learning is simply to pay attention to the details of the day. Not only pay attention to them, but enjoy them!
Let’s stay in touch — and be well!
Lindahttp://www.divaonadetour.wordpress.com

Well, it is winter here, so can get a bit cold, even in sunny Queensland. How is your summer treating you? Heat can muck with MS. In fact, it was a visit to the tropics (Vanuatu) that made me realize there was something very wrong with the way I was functioning – got of the plane into the heat and humidity and it felt like I had left my legs behind in the overhead locker. They say things can shift in flight. My health certainly did!

Winter. Even the winter here is no comparison to what you got there. But the heat my friend is horrific. I would definitely leave if haven’t tried already and failed horribly. I usually spend the day search for A/C.

I am so pleased a friend pointed me here, Nicole. I love your honesty and you are truly a wonderful writer. I’m only six months diagnosed but I guess symptoms for several years. No real ‘lessons’ for me so far apart from ‘shit happens’, but as you say, family becomes so important (not for assistance, just a focus) and material things so unimportant. And I couldn’t agree more or write a more succinct sentence than, “My life is not as much about this life changing disease as much as my response to it.” Best wishes from Australia, Nic.

Ian, I am too! I didn’t realize how much I enjoyed writing until I started blogging. They say your good at the things you enjoy Who knew?
You are ahead of the game. 6 months in and blogging…impressive. I am so excited I’ve reached Australia. What’s the weather like?

I can’t find the words to articulate how humbled I am by your story Nic. When I find those words I will come back to post. Simply telling you how you have touched my life with your sincere gift of friendship and your selfless acts of encouragement and motivation wouldn’t be enough. I pray for the spirit of peace, the same spirit of peace that never seems to leave you. I thank God that he has sent you to me.You, my friend, have made me a better person. Your ability to inspire and entertain, despite of, is and has been a blessing to everyone who knows you.